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TRAIN Newsletter—December 2021

TRAIN Newsletter — December 2021

TRAIN eNews is delivered directly to organizations that take part in The Research Acceleration and Innovation Network (TRAIN). TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach—what some refer to as “venture philanthropy”—to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the medical research system. To learn more about becoming a TRAIN organization, visit the TRAIN Application page.

In this Issue:

News from FasterCures
TRAIN Organization Updates
News You Can Use

News from FasterCures

Sign Up for the Course: Introduction to Drug and Device Law and Regulation for Patient Organizations on December 14-15
This virtual course put on by the Food and Drug Law Institute (FDLI) is designed for 501(c)(3) patient or disease organizations to learn the essentials of drug and device law and how to engage with the US Food and Drug Administration (FDA) to better support your organization’s advocacy efforts. Case studies will illustrate opportunities for engagement and legal challenges that many advocates face. This event will occur on December 14 and 15. FasterCures is a member of the program committee at FDLI.

FasterCures and the Milken Institute Center for Public Health Hosted the Partnering for Patients Forum on December 6 and 7, 2021
The 2021 Milken Institute Partnering for Patients Forum shone a light on the needs, insights, and ideas generated by and for the patient community as we continue to grapple with COVID-19 and its impact. From the public health fallout as a result of the pandemic to the tremendous opportunity standing in front of us for biomedical innovation, the Partnering for Patients Forum brought together the patient community and those who support them to discuss the priorities that will drive better health outcomes for individuals and communities. The public session recordings are on the Milken Institute website.

FasterCures Comments on the Reauthorization of the Prescription Drug User Fee Act (PDUFA VII)
In August, the FDA released a request for comments on PDUFA VII for fiscal years 2023 through 2027. The current legislative authority expires in September 2022 and needs to be reauthorized for the FDA to continue collecting prescription drug user fees. View FasterCures’ comment letter on the reauthorization of PDUFA VII.

Look Out for FasterCures LeadersLink Application in 2022
The FasterCures LeadersLink Program is a capacity-building program to support the personal development of an emerging cadre of leaders of nonprofit organizations that fund or conduct biomedical research. LeadersLink focuses on building participants’ leadership skills and professional network and addressing their top priorities through a capstone project, mentorship, a series of in-person convenings, and virtual collaboration. The program aims to help promising nonprofit research leaders from around the world build high-performing organizations and facilitate the growth of their peer support network. The application for new program participants and mentors will be posted in January 2022.

Encourage Your Peers to Apply to TRAIN!
Please spread the word to other nonprofits that fund or advance medical research that we are actively seeking applicants! Since 2005, FasterCures has convened dozens of forward-thinking patient foundations that participate in TRAIN to learn from each other and share their novel solutions with the rest of the medical research system. Now with over 110 organizations participating in TRAIN, FasterCures would like to continue building its network to include more patient-driven research organizations that are interested in building their capacity to use venture philanthropy to advance the development of new therapeutic options for the patient communities they serve.

TRAIN Organization Updates

Creating a Nonprofit Marketplace for Shelved Drugs: Lessons from a Pilot Project
FasterCures’ Bridge initiative was created to solve the challenge of shelved drug assets—that is, when drug companies discontinue the development of a drug for commercial/business reasons (rather than safety or efficacy reasons). This is a deeply frustrating challenge for patients and the organizations that represent them, who track drugs in the pipeline very closely and then unexpectedly find that they have been discontinued with no explanation. A recent report from FasterCures, Children’s Tumor Foundation, and Cure Search for Children’s Cancer describes the steps taken to pilot an approach to solve this challenge.

Michael J. Fox “We Have Answers in Us” at the 2021 HLTH Conference
Watch this interview of Michael J. Fox and Debi Brooks, the Co-Founder and CEO of the Michael J. Fox Foundation, respectively, at one of the world’s largest health care conferences, HLTH 2021. They discussed the influence patient involvement in research has on accelerating treatments and finding a cure. Fox referenced the foundation’s landmark study, Parkinson’s Progression Markers Initiative, about the role patients and families can have sharing their personal experiences to find answers that will help the patient population by finding better treatments and prevention.

Genetic Alliance and Illumina Team Up for the iHope™ Genetic Health Program
This global initiative aims to increase equity and improve outcomes for families impacted by genetic diseases. This $120 million program will fund the iHope™ Genetic Health program to make whole-genome sequencing more accessible in low- and middle-income areas. A third of the funds will be apportioned to patients in Africa. This program will create networks of clinics and give genome technologies to laboratories. Applications for clinical whole-genome sequencing programs will be reviewed in February 2022.

News You Can Use

Venture Philanthropy Done Right
The Kraft Precision Medicine Accelerator examines how venture philanthropy plays a role in developing treatments, conducting clinical research, and driving cures. This article discusses the impact that disease foundations can have with strategy, strong leaders, and the ability to catalyze a substantial amount of funding. Case studies are presented on JDRF T1D Fund, Alzheimer’s Drug Discovery Foundation, the Cystic Fibrosis Foundation, and the EB Research Partnership, and key elements to their successes with venture philanthropy are highlighted.

Chan Zuckerberg Initiative Awards $13 Million to Patient-Led Rare Disease Organizations
The Chan Zuckerberg Initiative announced its pledge of $13 million to its second cycle to the Rare As One Network, a group of patient-led organizations that prioritize advancing rare disease research. These grants focus on organizations tackling the challenges faced by rare disease groups during the diagnostic odyssey as well as prioritizing diversity and inclusion as they troubleshoot barriers to access. This funding aims to advance the development of an international, patient-led collaborative research network in the organization’s disease space, strengthen their organizational capacity, convene their communities, and align patients and researchers toward shared priorities.